Where I am going next
I am still in hot pursuit of the right care, but I believe I may have found a place that is willing to step out and take a chance to help me! In the next few weeks I should have an appointment to another medical center in another state.
So far with talking with these folks, they seem like they really want to try to help me. I am looking forward to it, and as the spiritual person I am, I think there may be some divine intervention going on here too.
I have thought very hard about what to do. After reading several articles on SVC syndrome from various medical journals, I detect all is not hopeless for me and in fact, pursuing this further is mandatory.
For my doc to sit on this and watch it happen I believe is a big mistake. SVC syndrome as we know it can occur with blood clotting, and I have another severe medical condition that desperately needs treatment--and I've been told over and over I need to take hormones. Those hormones are not to be taken with increased risk of blood clots.
In English, for my doc to sit on this shows how oblivious he is to my other healthcare needs and a more comprehensive approach is needed. And I intend to get it.
I will let you know how it turns out.
Thank you everyone, for your support and understanding!